Supported by a million HK dollar grant from the Hong Kong Research Grants Council’s General Research Fund, this Technologies of Care project examines the culture and ethics of end-of-life care in urban China. Following over three decades of market reforms and stringent birth planning policies, the People’s Republic of China is undergoing a dramatic demographic and cultural transformation that has significant ramifications for the care of older people and the critically ill. By focusing on fraught debates over the use and termination of costly medical technologies in Chinese hospitals, this research project will provide fresh data on emerging caregiving practices and health-seeking strategies.
The Primary Investigator Dr. Priscilla Song aims to produce the first research monograph on the culture and ethics of end-of-life care in urban China, linking transformations in family-based caregiving with the growing medicalization of death in Chinese hospitals. The interdisciplinary impact of this project is far-reaching, with important insights for understanding the role of medical technology in the context of a rapidly ageing society and an unevenly privatized health care system. Drawing on approaches from sociocultural anthropology and the medical humanities, Dr. Song will utilize mixed methods (including ethnographic observation, interviewing, surveys, and archival work) to collect comparative data on end-of-life treatment in tertiary care hospitals located in Beijing, Shanghai, Shenzhen, and Zhengzhou. With over half of all deaths in urban China now occurring in medical facilities, these sites for critical care offer a crucial window on how the medicalization of dying is transforming the ways in which Chinese patients, families, and medical professionals confront mortality. The project will integrate qualitative and quantitative data to provide a rigorous analysis of the challenges involved in caring for the critically ill in urban China.
This research project builds upon the principal investigator’s previous work on the culture and ethics of transnational biomedical technologies. While her first book Biomedical Odysseys (Princeton 2017) focuses on the efforts of terminally ill patients and their families around the world to pursue experimental stem cell therapies in urban China, this new research study goes beyond the pursuit of curative medicine to examine what happens when technological interventions are no longer able to restore health. By shifting the focus from cure to care, this project will illuminate the ways in which Chinese patients, family members, and health care providers negotiate the practical and moral challenges of care at the limits of medicine.
This TechCare project also supports the work of research postgraduate student Ms. Tianyi Yan. Ms. Yan is conducting research on the sociocultural and structural factors that enable or impede mainland Chinese volunteers to persevere in providing pediatric hospice care service. She is interested in exploring how volunteers-as-strangers are able to continue participating in the dying process of terminally ill children. She will document the training protocols, service practices, social interactions, institutional contexts, attitudes and beliefs of pediatric hospice care volunteers (including aspiring volunteers planning to serve as well as former volunteers who have quit). She will examine how volunteers and clinical staff (including doctors and nurses) experience and interpret pediatric hospice care and volunteerism in the context of China’s demographic transition (shrinking family size and rapidly aging population), transformations in medical resource distribution (including health inequalities and recent health care and insurance reforms), the nascent stage of pediatric hospice care development, and public concerns about a growing “moral crisis.” She will identify service-related difficulties and challenges faced by current, former and future volunteers and how these affect their coping practices, moral experience, and interpretation of moral breakdowns and ethical dilemmas.
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Hong Kong Research Grants Council, General Research Fund, project summary for Technologies of Care (PI Dr. Priscilla Song).
Song, Priscilla. Technologies of Care: Confronting Mortality in Urban China. Book manuscript in preparation.
Yan, Tianyi. Pathways to Perseverance: Pediatric Hospice Care Volunteers in Mainland China. MPhil thesis for the University of Hong Kong, in preparation.
Yan, Tianyi and Priscilla Song. “Chronic Dying in a Pediatric Hospice Ward in Beijing.” Presentation for the Chronic Living Conference (2021).